Join us on Thursday, September 5, 2024, at 11:00 A.M. (Washington DC, or EDT) for the launch of the “Advocate’s toolkit for making epilepsy a priority in the Americas” which was co-developed by the International Bureau for Epilepsy (IBE) and the Pan American Health Organization (PAHO). Its purpose is to foster stakeholder engagement aimed at reducing stigma, enhancing social inclusion, and improving access to healthcare and treatment for people with epilepsy. The toolkit offers information, strategies, examples, and templates to assist advocates in crafting effective advocacy approaches.
This webinar aims to introduce participants to the advocacy toolkit, designed to enhance their skills in basic advocacy strategies to enable them to develop and implement impactful advocacy campaigns. It is open to all interested individuals.
The “Advocate’s toolkit for making epilepsy a priority in the Americas” was co-developed by the International Bureau for Epilepsy (IBE) and the Pan American Health Organization (PAHO). Its purpose is to foster stakeholder engagement aimed at reducing stigma, enhancing social inclusion, and improving access to healthcare and treatment for people with epilepsy. The toolkit offers information, strategies, examples, and templates to assist advocates in crafting effective advocacy approaches.
Recording in English
How to participate
- Date: Thursday, 5 September 2024
- Time: 11:00 A.M. (Washington D.C. or EDT) [Check the time in other cities at the bottom of this page]
- Languages: Spanish and English with simultaneous translation.
- Registration: https://paho-org.zoom.us/webinar/register/WN_muiNM8CFRW6vO2yOKoZLlQ#/registration
If the Zoom room exceeds capacity, the session will be recorded and published on the event's webpage and the organization's YouTube account.
Context
Epilepsy is a chronic, noncommunicable neurological disorder characterized by an enduring predisposition to epileptic seizures, affecting individuals of all ages. In the Region of the Americas, approximately 5 million people are affected by epilepsy, accounting for 0.7% of the regional burden of disease. Globally, 50 million people have epilepsy, contributing to 0.5% of the global burden of disease, with 80% of that burden present in developing countries. Each year, there are around 2 million new cases of epilepsy worldwide, and the incidence rate in developing countries is double that of developed countries. The mortality rate among those with epilepsy is higher than that of the general population, with Latin America and the Caribbean experiencing a rate of 1.04 per 100,000 inhabitants, compared to 0.50 per 100,000 in the United States and Canada. Additionally, more than half of the individuals with epilepsy in Latin America and the Caribbean lack access to necessary medical services, leading to untreated or poorly managed conditions.
Overall, epilepsy is one of the most common neurological diseases, with a risk of premature death in people with epilepsy being up to three times higher than in the general population. Roughly half of adults with epilepsy have at least one other comorbidity, particularly mental health conditions such as depression and anxiety. These comorbidities have a bidirectional relationship, meaning that the presence of epilepsy can increase the risk of developing depression and anxiety, while these mental health conditions can also exacerbate the frequency and severity of seizures reducing the quality of life. Furthermore, people with epilepsy worldwide face significant stigma.
IBE works to achieve a transformational social change for people with epilepsy worldwide. It aims to make epilepsy a global public health priority, to empower and amplify the voices of people with epilepsy, and to serve and support its chapters. Today, IBE has 160 chapters in 110 countries, including over 30 full and associate chapters across the Americas.
The collaboration between PAHO and IBE is crucial in addressing the high burden of epilepsy, promoting human rights, and ensuring equitable healthcare access, thereby improving outcomes for those affected by epilepsy in this region.
Agenda
11:00 a.m. Opening remarks by PAHO representative
- Dr. Renato Oliveira, Unit Chief Mental Health and Substance Use, PAHO.
11:05 a.m. Opening remarks by IBE representative
- Dr. Francesca Sofia, President for Latin America, IBE.
- Dr. Alicia Bogacz, Vice-president for Latin America, IBE.
11:15 a.m. Presentation of the PAHO/IBE Advocate’s Toolkit For Making Epilepsy A Priority in The Americas
- Mary Secco, Director Epilepsy Southwestern Ontario, Chair of Global Outreach, IBE.
- María Marta Bertone, Chair of the IBE Community Council.
11:35 a.m. Panel Discussion
Moderator: Dr. Francisco Varela, Consultant for Neurology, PAHO.
Panelists
- Dr. Keryma Acevedo, President of the Collaborating Center Chilean League Against Epilepsy.
- Nichole Vanderpool, President and Founder of the Seizure Awareness Foundation of Trinidad and Tobago.
- Dr. Juan Luis Castro, Senator of Chile.
12:05 p.m. Questions and answers
Moderator: Ignacio Ibarra, Advisor for Health-related law, PAHO.
12:25 p.m. Closing remarks
- Dr. Marco Medina, Center Director of the Collaborating Center National Autonomous University of Honduras.
Time in other cities
- 8:00 a.m. – Los Angeles, Vancouver.
- 9:00 a.m. - Belmopan, Guatemala City, Managua, Mexico City, San Jose (CR), San Salvador, Tegucigalpa,
- 10:00 a.m. – Bogota, Kingston, Lima, Panama City, Quito
- 11:00 a.m. – Asunción, Bridgetown, Caracas, Georgetown, Havana, La Paz, Port of Spain, Port-au-Prince, Nassau, Ottawa, Santiago, San Juan, Santo Domingo, Washington D.C.
- 12: 00 a.m. - Buenos Aires, Brasilia, Montevideo, Paramaribo.
- 5:00 p.m. – Geneva, Madrid.
For other cities, check the local time using the following link.
Related links
WHO Intersectoral global action plan on epilepsy and other neurological disorders